Go to Home Page
Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery
  Username:    Password:      Remember me       

You can get your life back
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

MICROSCOPIC COLITIS SUPPORT Forum IndexVisit the Microscopic Colitis Foundation Website

The only comprehensive book ever written about Microscopic Colitis
Can be ordered at any bookstore or library
 FAQFAQ  RulesRules   SearchSearch   MemberlistMemberlist   UsergroupsUsergroups  ChatChat   RegisterRegister 
 ProfileProfile   Log in to check your private messagesLog in to check your private messages   Log inLog in 
 World Time Clock--Time ZonesPotty People T-ShirtsPrivacy Policy
SearchSearch The Archives of This Discussion Board
How long can you stay on Entocort?

Post new topic   Reply to topic       MICROSCOPIC COLITIS SUPPORT Forum Index -> Discussions on Treatment Options Using Diet, and/or Medications
 View previous topic :: View next topic  
Author Message

United States

Joined: 17 Apr 2017
Posts: 1
User's local time:
2018 Jan 21 - 8:57 AM

Food Intolerances : soy, lactose intolerance, corn, many many more

PostPosted: Wed Dec 06, 2017 1:28 pm    Post subject: How long can you stay on Entocort? Reply with quote

I was diagnosed a year ago with MC, and started treatment with six capsules of budesonide a day. I was doing quite well, and saw the GI in the spring, who said if I can, to try and taper off. Because my summer is always extra stressful with my work, I tried a couple of times to reduce it, but still had problems. More so, in the fall, that after I would have a BM, I would have terrible cramping and pain for most of the day. No diarrhea. Anyway, went to another GI dr to get a second opinion, she was aghast that I had been on the budesonide so long, and had me start tapering right away. I had been following a gluten-free and dairy free diet and had been doing fairly well as long as I did not eat any of the trigger foods. Now, I am completely off of the budesonide, but have recently had a severe relapse. I am still trying to deal with the cramping, which becomes severe. Help! Do I have to go back to the original GI to see if I should taking the budesonide again, or can I just start myself?

I am not that thrilled with the new GI doctor anyway, as she wants to do some really expensive tests in my upper GI, that's not where the pain or the problem is.

I guess my real question is, how long can you stay on the budesonide?

Amy Lorenzen
Back to top
Site Admin
Site Admin

Joined: 24 May 2005

Posts: 31005
User's local time:
2018 Jan 21 - 8:57 AM

Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Dec 06, 2017 3:34 pm    Post subject: Reply with quote

Hi Amy,

Welcome to the forum. Despite what most gastroenterologists claim, according to published research, you can probably safely stay on it pretty much indefinitely. Check this research article:


Budesonide at a mean dose of 4.5 mg/day maintained clinical remission for at least 1 year in the majority of patients with collagenous colitis and preserved health-related quality of life without safety concerns. Treatment extension with low-dose budesonide beyond 1 year may be beneficial given the high relapse rate after budesonide discontinuation.

Low-dose budesonide for maintenance of clinical remission in collagenous colitis: a randomised, placebo-controlled, 12-month trial

We have a few members who, despite a restrictive diet, are unable to stay in remission without a reduced dose (maintenance dose) of budesonide. Some of them have used budesonide continuously for at least 5 or 6 years now, without any significant signs of side effects or other adverse results. Bone density tests usually indicate no significant changes.

Again, welcome to the forum, and please feel free to ask anything.


It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Back to top
Emperor Penguin
Emperor Penguin

Joined: 21 Dec 2009

Posts: 7343
User's local time:
2018 Jan 22 - 12:57 AM

Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Wed Dec 06, 2017 3:59 pm    Post subject: Reply with quote

Welcome (and sympathies that you had to find us)

further to Tex's reply above, what we have seen over the years here that medications have a limited scope of success in calming the inflammation if;
- person is deficient in Vit D3 and magnesium and/or
- they consume/have contact with too many inflammatory triggers

you mention doing GF and DF - and seeing improvement, but maybe this was not enough if you were still having fruit, salads, (ie too much fibre and sugar) and/or other inflammatory ingredients like processed items, eggs, soy etc.
the other aspect for many MC'ers here is histamine issues, both food and environmental triggers causing lots of inflammation in the gut. do you take antihitamines at all?

The Vit D3 and magnesium are also crucial to protecting bone health when taking steroid medication long term.

hope this helps
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Back to top
King Penguin
King Penguin

Joined: 07 Jul 2007

Posts: 4765
User's local time:
2018 Jan 21 - 8:57 AM

Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit except mango, all vegetables, tomatoes, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Sun Dec 10, 2017 7:17 pm    Post subject: Reply with quote

Welcome to the board, Amy!

I was diagnosed ten years ago and have been on budesonide almost continuously since then. Each time I went off of it, I would relapse, in spite of being on an extremely restricted diet. I presently take 3 mg. (one pill) for three days, then no pill, then repeat the cycle. I am stable with this dosage and am not able at this point to reduce it further without having problems.

I have had no issues that I can attribute to taking the budesonide. I do have osteoporosis, but was diagnosed with it before I began the budesonide. My GI, who has retired, encouraged me to stay on the full dose a couple of years ago and wrote a script for an entire year of three pills a day. He saw nothing wrong with me taking three pills per day, even after being on it for eight years at that time. I weighed 83 lbs. and he was concerned for my well being. I only took one, sometimes two a day, so the prescription lasted for over two years.

I took the 23andMe genetic and medical testing and the Promethease report stated that budesonide was of "good" repute for me, according to my genes. I stopped worrying about it at that point.

If you need it to resolve your symptoms, by all means take it, but also keep working on reducing it by getting rid of all inflammatory foods as Gabes suggested.

You never know what you can do until you have to do it.
Back to top
Display posts from previous:   
Post new topic      Reply to topic    MICROSCOPIC COLITIS SUPPORT Forum Index -> Discussions on Treatment Options Using Diet, and/or Medications All times are GMT - 6 Hours
Page 1 of 1

Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum

Remove cookies set by this forum

Search online dictionaries
(Powered by OneLook® Dictionary Search)
Enter word or phrase:
Enter a word to search for dictionary web sites that include that word.
Enter a pattern consisting of letters and wildcards to search for words.
Valid wildcards are * (matches multiple letters) and ? (matches one letter).
Locations of visitors to this page

Powered by phpBB © 2001, 2005 phpBB Group
IP Country Flag 2.9.6b © 2005, 2008 - 3Di (aka 3D)

Copyright 20052017 perskyfarms.com, All Rights Reserved

Copyright Notice: The material on this site is copyrighted by perskyfarms.com, and it is protected from unauthorized copying and dissemination by United States copyright law, trademark law, international conventions, and other intellectual property laws. This copyright protection also extends to any and all images, found on any and all pages of this site.

Please contact us at this address for permission, if you wish to use any material on this website for any commercial or public purpose.

We have made a good faith effort not to violate any copyright. If we have unknowingly done so, please contact the site administrator, at this address, and the issue will be promptly corrected.

Disclaimer: The information contained within this site is intended solely for general educational purposes, and is not intended, nor implied, to be a substitute for professional medical advice relative to your specific medical condition or question. Anyone who chooses to use any information found here, does so at his or her own risk. Always seek the advice of your physician or other health care provider for any questions you may have regarding your medical condition. Only your physician can provide specific diagnoses and therapies. By using this site you agree to the following terms and conditions:

Certain members of this discussion board are practicing medical professionals. They are not here to offer medial advice, they are here because they have been diagnosed with microsopic colitis, and they are interested in sharing their own personal experiences concerning the disease, and learning from others in all walks of life, who also have to deal with these issues. If you have any questions or concerns regarding your health, you should consult with your own doctor, or medial professional.

If you think you may have a medical emergency, call your doctor, or 911, immediately. The members of this board, regardless of whether or not they are medical professionals, cannot respond to issues requiring urgent medical attention. Please note that no legal action can be taken by any user of this site, as a result of any information found here, and that none of the parties involved, neither individually, nor collectively, nor the owner of this site, can be held responsible for any information offered in the course of discussions, regardless of circumstances, whether those discussions are in a public or private form, and regardless of whether of not any of the parties involved are professionals. Remember that this discussion board is not intended to be a replacement for a consultation with your doctor or other medical professonal, it is intended as a sharing of knowledge and information from the research and personal experience of the members of this discussion board.

This site does not recommend or endorse any specific tests, products, procedures, opinions, or other information that may be mentioned anywhere on this site. Reliance on any information provided here is solely at your own risk.

Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery